Value Sharing Framework for NHS data partnerships

NHS data partnerships allow NHS organisations to collaborate with partners from academia or industry to use health and care data for research, development and innovation. They deliver major benefits for patient care and the UK economy, and it is critical that the agreements that underpin them are consistent, fair and robust.

This framework sets out the principles NHS organisations and their partners should follow.

Research by the National Data Guardian shows that the public understands the value of using data to improve patient care through research and development.

However, there are concerns about the security of sensitive data when the NHS partners with external organisations in the use of data. The public wants the NHS to ensure that fair terms are agreed for the use of public resources in data partnerships, including a fair share of any profits that are generated from partnerships that are commercialised.

Policy in this fast-developing area aims to realise the potential public benefits of NHS data partnerships in full and address public concerns about them. In July 2019, the Department of Health and Social Care (DHSC) published a set of guiding principles for data partnerships. Principle 2 says: “NHS organisations entering into arrangements involving their data, individually or as a consortium, should ensure they agree fair terms for their organisation and for the NHS as a whole.”

Until now, individual NHS organisations applied this general principle to their data partnerships in different ways. This has led to a degree of variation in the terms that NHS organisations have sought, which in some cases has delayed or deterred data partnerships of significant potential benefit to patient health.

The NHS Secure Data Environment (SDE) Network provides secure, consistent, and efficient access to data for research that improves health and care. SDEs are data storage and access platforms that uphold the highest standards of privacy and security in the use of NHS health and social care data for research and development. 

The Value Sharing Framework was introduced in early 2023 to complement the move toward SDEs. The framework accelerates the negotiation of fair terms for data partnerships with the potential to improve patient care and deliver other public benefits. Applying it to new data partnerships rapidly expands the scale and scope of NHS data partnerships and the benefits they deliver to patients.

Negotiating a fair share for the NHS of any value arising from a data partnership can be challenging. Setting a specific monetary value for data is complex and depends on numerous factors, such as the use case, the type of data being asked for, who else is asking for the data, the work needed to collect and curate the data, and the ability of organisations to pay. There is no single solution to evaluating the worth of data. These challenges can lead to protracted negotiations that delay or block valuable innovation. In some cases, there is a risk of entering partnerships on terms that are not fair.

The Value Sharing Framework is a set of principles designed to simplify and accelerate negotiations between the NHS and external organisations for data partnerships. The objective of these principles is to promote innovation by aligning incentives and simplifying processes. They are based on extensive engagement with data partners and the public.

While the principles of the framework remain constant, the details of the value-sharing arrangements they shape continue to evolve over time. They will reflect improvements in data, impact of the SDE Network and changes in the numbers of users of NHS data and their needs. These principles will be mandated in certain national investment areas, such as the national SDE and regional SDEs. They are strongly recommended for use in all NHS bilateral partnerships.

Principle 1: Cost of access should not prevent good use of data

Researchers and innovators should be encouraged to securely access NHS data, which has the potential to improve patient care. Protracted negotiations risk delaying or even preventing the NHS from delivering these benefits to the public. A consistent, efficient approach that aligns incentives for all parties is preferred to optimising each individual negotiation. The costs of access should not be prohibitive to good uses of data.

Principle 2: The NHS will always charge a fee for accessing health data

The NHS should seek to recover the costs of providing access to data. Failing to recover these costs, including a proportionate share of overheads, takes money away from frontline services.

Principle 3: The cost of access should depend on how data is being used

When deciding how much to charge for access to data, NHS organisations should consider how the data will be used, as well as the type of data being requested. The cost of access should not be dependent on the nature of the partner organisation. This means NHS parties should not routinely set a relatively high charge for commercial companies and a low or no charge for non-commercial academic institutions or charities – the charge should depend on the use case.

Principle 4: The NHS should share in the value created by its data

The NHS should seek a share of any commercial value arising from a data partnership proportionate to the NHS’s contribution to that value. The NHS contribution will vary by project and will factor in the source data and any clinical or analytical expertise.

For partnerships with non-commercial uses of data, ‘consent to commercialise’ clauses in initial agreements can allow for the negotiation of financial value sharing in the future. For partnerships with commercial uses, value shares can be agreed upfront using milestone payments or revenue royalties. The ability to command value shares, particularly from commercial uses of data, will depend on the maturity of the service offering compared to international comparators. To support a thriving innovation landscape, the NHS should focus on providing data within SDEs that meets user needs, rather than seeking value shares that stifle innovation. Value shares will follow and increase once NHS data can meet the needs of researchers and innovators.

The application of these principles will evolve as the NHS research data ecosystem matures. The SDE network is still developing, with ongoing investment, service improvements and the continued refinement of operating models. As services become more efficient, costs, funding arrangements and approaches to value sharing may change over time. NHS organisations and data partners should therefore retain flexibility when agreeing commercial terms, recognising that value-sharing approaches will need to adapt to reflect the maturity of services, changes in the wider health and research landscape, and evolving sources of public and private investment.

The expansion of the NHS Research SDE Network and the introduction of the Value Sharing Framework requires changes to the way NHS organisations participate in data partnerships for research and development. The DHSC has been working with the NHS to move to a system of 'data access as default' for secondary uses of NHS data, facilitated by the implementation of SDEs. Data access policy does not change existing rules regarding data controllers, processors and accessors. However, it changes the mechanisms of how NHS data is accessed for secondary use. The Value Sharing Framework works alongside the developing data access policy in this area.

Data partners contribute different resources to a data partnership. NHS partners generally contribute data, clinical and operational expertise, and, sometimes, access to public funding. External partners may contribute expertise in curating data for research and analysis, data analysis, finance, product development and marketing.

Combining these resources in data partnerships for research, development and innovation gives data partnerships the potential to provide significant public benefits. These fall into 3 main categories:

1. Health benefits

Patients, the population and public health systems can all benefit from data partnerships. Outputs from these partnerships can improve the quality of care, enhance patient engagement and participation, and support the development of new treatments and therapies. They can also help to improve the detection, prevention, and management of diseases, including chronic conditions and infectious diseases. These benefits include:

Better outcomes and care for individual patients, such as:

• faster, more accurate diagnoses from new digital diagnostic tools
• new treatments
• more staff time made available by new decision support and operational management tools

Better population health, such as:

• tailoring of available products and treatments to specific UK population health needs
• more detailed understanding of the diseases and trends affecting population health and wellbeing
• improvements in public health systems supported by continuous analysis of system data at scale

2. Social benefits

Data partnerships can support public health initiatives, facilitate research collaborations, and improve patient outcomes and safety. They can also help to address health disparities and support the development of personalised medicine.

3. Economic benefits

Data partnerships can allow the development of new products and services, support innovation, and create new business models. They can also help to reduce healthcare costs and improve efficiency, which can benefit both healthcare providers and patients. These benefits include:

• higher UK GDP from external investment in research and development attracted by the UK’s reputation for leading in life sciences and other research
• local economies strengthened by external investment and the creation of new skilled jobs
• extra money for the NHS that is reinvested in improving health and care services for patients

Further information on the value of data can be found in the Open Data Institute’s report on ‘Understanding the social and economic value of sharing data’. The report explores the challenges organisations face when estimating and realising the value of data and looks at mechanisms and incentives for data sharing.

The National Data Guardian has published guidance to support organisations in evaluating public benefit when they are planning to use, or allow access to, data collected during the delivery of care for planning, research and innovation purposes.

Principles for dealing with resources in public sector organisations in the UK are set out in HM Treasury’s ‘Managing public money’ publication, which was updated in April 2023. The Value Sharing Framework builds upon the basic principles and standard practice set out in chapter 6 of that publication.

The Balance Sheet Framework, published by HM Treasury in April 2026, sets out principles for the effective management of public sector assets, liabilities and risks to support sustainable value for taxpayers. The NHS Intellectual Property (IP) Guidance for England provides practical principles, tools and model agreements to help NHS organisations identify, manage, protect and realise value from intellectual property, while supporting innovation, partnerships and benefits for patients and the wider NHS.

Existing commitments affecting NHS data partnerships are set out in the Data Saves Lives strategy (June 2022) and Department of Health and Social Care’s 5 principles to help the NHS realise benefits for patients and the public in data partnerships (2019).

The Data Saves Lives strategy states that “The future of the NHS depends on improving how we use data for 4 related purposes” including “using data for the research and innovation that will power new medical treatments”. The strategy sets out plans to harness the potential of data in health and care in England, while maintaining the highest standards of privacy and ethics.

The DHSC’s 5 principles stipulate what NHS data sharing partnerships must do to realise their potential benefits for patients and the public:

1. Use of NHS data must have an explicit aim to improve patient health and care or the operation of the NHS.
2. Fair terms should be agreed for the NHS.
3. NHS organisations should not enter exclusive arrangements.
4. Arrangements should be transparent and clearly communicated.
5. Arrangements should adhere to all applicable legal, regulatory, privacy and security obligations.

Developing the Value Sharing Framework

The Value Sharing Framework was developed between 2020 and 2023, building on the experience and knowledge gained through engagement with NHS innovation, technology and data leads. The team working on these principles also studied and advised on existing data partnerships with academics, private companies and the third sector.

The team behind these principles studied international examples of best practice in data partnerships to find the most appropriate approach for the NHS. Results from this research were fed into a first draft of the Value Sharing Framework for testing.

Testing the commercial principles

In late 2022, NHS England began testing the principles with a range of stakeholders, including members of the public, NHS data controllers and organisations seeking to access NHS data.

a) Patient and public involvement and engagement

After a competitive tender process, NHS England appointed Britain Thinks (now called Thinks Insight & Strategy) to run engagement activities with the public about the commercial principles. 2,000 people completed an online survey, and 3 deliberative workshops were organised.

The introduction of commercial principles for access to NHS data was seen as a step forward, with most participants strongly agreeing that NHS data has great potential to support innovation, bring benefits to patients and bring income to the NHS.

In the quantitative survey, 7 in 10 people thought the principles were clear. A similar proportion thought the commercial principles were acceptable.

About 70% of participants felt it was appropriate for the NHS to recoup the costs of data access, with 7% feeling it was not appropriate. Qualitative feedback indicated that participants felt that charging for access based on commercial and non-commercial uses was acceptable and having different prices for commercial and non-commercial use was right and fair.

Participants agreed that the NHS needs to increase its income, but they wanted to avoid high costs being prohibitively expensive for individuals or small organisations who were not selling their outputs. Some participants felt that higher charges would not significantly impact commercial organisations with the potential to make large profits from selling the outputs and that they therefore could be charged a higher fee.

70% of participants thought it was appropriate for the NHS to share in the value of revenue generated from products or innovation that used NHS data. Qualitatively, most people supported the NHS taking a value share of revenue, though struggled to articulate why they believed this was fair, beyond a feeling that the value share would be a small proportion of the commercial ventures’ revenue and could greatly benefit the NHS.

b) Engagement with NHS data controllers

These principles were presented to a range of NHS data controllers, including local NHS commercial, research and operational leads, research organisations, and the wider NHS, including NHS Digital (now part of NHS England).

c) Engagement with users of NHS data

A range of users of NHS data were consulted with on these principles, including the NHS England Data for Research and Development Programme Health Data User Group (a collection of approximately 400 interested parties seeking to learn more about Data for Research and Development Programme investments), the BioIndustry Association and individual companies and innovators. In November 2022, these principles were presented to representatives from several universities during a roundtable discussion.

The principles of the Value Sharing Agreement continue to be recognised and are widely used by NHS organisations to support the negotiation of fair terms for NHS data partnerships.